Conversations With Prostate Cancer Experts

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Dr. Roni Zeiger left a position as Google’s Chief Health Strategist to explore the intersection of social media and health. As part of that journey, he created an online patient community called www.smartpatients.com.

Prostatepedia spoke with him recently about online patient communities and the power of connection.

How did you come to run an online patient community?

Dr. Zeiger: It’s a hard question to answer. I’m on this very nonlinear journey that has included being a young scientist, then a doctor, and now a patient community builder.

When I was training to be a doctor and then practicing as a physician, I practiced in what I think is a very traditional way.

The reality is that we have an expert-centric healthcare system in which patients and families are generally thought of as passive recipients of hopefully high-quality care they’re receiving from physicians and other members of the healthcare team.

That healthcare system doesn’t work that well and most efforts to improve it continue to be expert-centric.

It’s about discovering new drugs and building better machines and designing smart hospitals.

During parts of my journey, while exploring how technology can improve healthcare, I accidentally started learning about the way patients were using the internet not only to find more information, but also to find each other.

That happened when I was working at Google, where I worked from 2006 to 2012. I studied how people use the Google search box to answer their health questions. While most people were using the search box to look for information, over those years an increasing number of people were looking for others with similar experiences.

If you think about it, connecting with each other in the context of our health issues is just normal human behavior. Yet, it’s not something that we regularly think about when we practice medicine. I’ve informally polled thousands of physicians over the years and fewer than 1% of them have ever introduced one of their patients to another one of their patients. Isn’t that amazing? That’s not because we have discussed peer support and decided it’s a bad idea. It’s simply because it’s not part of our training and not how we think. Our traditional medical model is designed for patients to receive good care from us and hopefully that works well.

I got obsessed with the idea of how can we take advantage of this underutilized resource in healthcare. How can we help patients and families find each other, support each other, and learn from each other in productive and respectful ways? How can we make that part of their healthcare experience—not something that happens behind the scenes?

What are the differences between online and in-person support communities?

Dr. Zeiger: I think the differences between online and in-person communities aren’t as large as others might think. In both cases, it’s about connection, support, and understanding that you’re not alone. There are things that you can do in-person that are almost impossible online in terms of how you can connect with someone—eye contact and even more obvious empathy. There are things you can do online that are hard to do in person: connect with more people who have had experiences just like yours, not all of whom can show up at the same time for a meeting because they’re sick or they’re far away or they had another commitment. Both types of support groups are complimentary and compatible with each other.

The biggest advantage of an online group is convenience. Assuming that you’re comfortable being online, it’s easier for some people to spend 15 minutes here and there interacting with their community, rather than meeting at a certain time far away from their homes each month.

Can you explain the concept of creating networks of micro-experts?

Dr. Zeiger: When someone in an online community poses a question, often a certain subgroup of that community gets most involved in the discussion. When a different kind of question is posed, a different subset of the community might have knowledge and experience related to that question or that issue. For communities that work really well, the idea is that the most relevant knowledge and experience surfaces in each conversation.

If you think about it, each of us is an expert in certain things that we’ve experienced or studied ourselves. Each of us is a micro-expert. Every conversation in a community is a unique combination of the perspectives of these micro-experts. This is very different from a model in which we decide that one person in the community is the smartest and everyone turns to him or her to answer questions. Instead, we have a community of many individuals who are dynamically learning from each other.

So then this is more of a collaborative team approach?

Dr. Zeiger: Collaborative and team. I love those words. That’s right.

Are you saying that this online collective of patients can become members in a patient’s healthcare team—just as the doctor, caregiver, and patient are team members?

Dr. Zeiger: Today this is still mostly happening separate from someone’s experience with the healthcare system. But as a patient, you certainly can think of that online community as part of your team.

Today, an online community wouldn’t interact with the traditional parts of your healthcare team. You can imagine a future where that might happen. We just haven’t figured out how to do that yet. A lot of community members do think of the community as a really important part of their team.

Can you walk us through how smartpatients.com works?

Dr. Zeiger: Smart Patients is really simple. It’s an online space where patients and family members can learn from and support each other. Anyone can sign up directly for the prostate cancer community at http://www.smartpatients.com/prostatecancer.

After a quick sign-up process, you’ll simply see a bunch of ongoing conversations. You can read the ones that seem interesting to you, participate in any conversations that you would like to participate in, and start a conversation if you would like to. That’s it.

Many men with prostate cancer have other diseases—diabetes or other cancer types. Can a prostate cancer patient sign up for multiple communities?

Dr. Zeiger: We want to keep things really simple, especially because a lot of our community members didn’t grow up with computers and social media.

Most people join a community, like the prostate cancer community, and then over time we make it easy for them to also see conversations about other topics that might be interesting to them like diabetes or dementia or heart disease.

They don’t have to join multiple communities. We make it so that those other conversations just get incorporated into their simple community experience.

That seems very easy. I know other online communities ask you to join each individual group.

Dr. Zeiger: We’ve worked really hard to make it a simple single interface so that just about anybody can use it.

You also have a clinical trials section. Can you talk about how that works?

Dr. Zeiger: As we were building http://www.smartpatients.com, we got a lot of requests to make it easy for patients to search for clinical trials. There is a government-run database that anyone can access at http://www.clinicaltrials.gov, but a lot of patients find that difficult to use.

We created an easier way to access that same information and incorporated it into our community platform. It’s really easy for someone to find a trial and start a conversation in the community about it. Patients will often find a trial of interest to them and then ask the community what they think about that trial or if they have other suggestions.

A patient, researcher, or pharmaceutical company doesn’t need to post it to the conversation: the information automatically feeds into your platform?

Dr. Zeiger: I think many of us underestimate how much patients know and how much they can support each other. Most of your readers could become a great resource for other patients by participating in an online community. It’s not just about finding information you might need. It’s rewarding to so easily be able to help each other.